Bryan, 2 years old

Our second child was born on May 2, 2002, we felt so blessed to have another healthy baby! However, at Bryan’s two week check-up the doctor heard a heart murmur and wanted him checked by a cardiologist. We didn’t panic at first as our daughter had a heart murmur that disappeared before she turned 1. On the way to the appointment, both my husband and I started getting a terrible feeling. The cardiologist confirmed with an ultrasound that indeed Bryan had a heart defect, Coarctation of the Aorta. As we listened to the cardiologist explain the problem and the solution it was as if we were in a blurred state. It wasn’t until a week later, when we received all the information from Boston Children’s Hospital that it started to make sense and we were frightened by the severity of his condition and surgery.

At seven weeks of age, we arrived at Children’s for Bryan to undergo surgery to completely repair the coarctation. Everyone told us, “of heart defects this is the easiest to correct”, however that doesn’t help when it’s your child that has to undergo major heart surgery. We were scared to death. I will never forget the clothes he was wearing or how he looked when we had to hand him over to the nurses that were taking him into surgery.

Bryan came through the surgery and the repair was successful! He was moved to Intensive Care where we could see him a short while later. He did require a blood transfusion later that night but responded well. I was able to nurse him 19 hours after surgery! He spent only 3 days in the hospital and was released under a home nursing care program. The first few days home were the worst, we were told to keep him somewhat secluded from others to prevent germs or the spread of any colds, etc, but all he did for two days was cry and I was so worried that he was in pain or having some type of problem, so I did lots of crying too. After a few calls to the doctors, we were told he was just very uncomfortable because of gas build- up which is common after surgery, and he would be better once it worked it’s way out. They were right!

After about 2 months of blood pressure checks, Bryan was able to stop all his medications and received a release from the cardiologist. His first 3 follow-up appointments with the cardiologist went great, they feel confident that the aorta is growing well and he will probably not need any further intervention. I can’t get the worry out of the back of my mind though, hopefully as time passes it will get easier.

At his latest check-up they have found another abnormally: a thick mitral valve. The cardiologist assured me that the valve was still working properly and there is “really nothing to worry about at this time, we will just watch it”. Again, how can you not worry, this is my baby! I know I just have to believe in God and the great doctors that take care of him. Not a day goes by that I don’t think about how all of this will impact his life. I worry about him playing sports (the doctors say he does not need any restrictions, but I worry just the same), I’m concerned about his diet and staying heart healthy, etc., but I guess that is what parents do: worry about their children no matter their age!

Bryan is the happiest kid around who is growing so fast, nothing slowing him down! You would never know to look at him that he underwent such a battle at an early age unless you happen to see his scar, which will be with him always. He loves trucks and tractors and playing with his big sister Stephanie. He loves to cuddle and read books. He is our wonderful “heart” baby, our blessing!